By: Demetria Ennis-Cole, Ph.D

By: Demetria Ennis-Cole, Ph.D.By: Demetria Ennis-Cole, Ph.D.

Profiles of Autism North Texas

General FindingsGeneral Findings

Study: Faces of Autism North Texas (2007-2009)

80% Return Rate More than 280 Families Responded

Individuals residing in other states (Vermont, Connecticut, Kansas, Tennessee, Arkansas, Massachusetts, Michigan) and other parts of Texas (south and west) took the survey; their information was not included.


The diagnosis was typically made by: The diagnosis was typically made by:

Team of Professionals in 28.1% of the families, Team of Professionals in 28.1% of the families, Clinical Psychologists in 25.5% of the families, Clinical Psychologists in 25.5% of the families, School Counselor or School Psychologists in 17.9% of School Counselor or School Psychologists in 17.9% of

the families, the families, Psychiatrist in 16.3% of the families, and Psychiatrist in 16.3% of the families, and Local Clinic or Family Physician in the remaining 12.2% Local Clinic or Family Physician in the remaining 12.2%

of families. of families.


According to the families surveyed in the North Texas According to the families surveyed in the North Texas area, their children with Autism were most commonly area, their children with Autism were most commonly given the following diagnosis: given the following diagnosis:

1.) Autistic, 1.) Autistic,

2.) PDD-NOS, and 2.) PDD-NOS, and

3.) Asperger’s Syndrome 3.) Asperger’s Syndrome


Parents of children in North Texas affected by Autism are typically between the ages of 35 and 44 (53.3%), and they use the Internet regularly from their home to research information on Autism Spectrum Disorders (more than 95%).

These parents rely on their local Autism Society for information, and many attend local conferences on ASD. Several (19.9%) attend state and national conferences to gain additional insight and information on ASD.

General Findings – Age of ParentsGeneral Findings – Age of Parents

General Findings – Parents’ General Findings – Parents’ Internet AccessInternet Access

Educational Level of ParentsEducational Level of Parents Most parents have attended college or are college Most parents have attended college or are college

graduates. graduates.

Educational Placement of Educational Placement of ChildrenChildren

Children attended public school, followed by private Children attended public school, followed by private school, home schooling, and other placement options. school, home schooling, and other placement options.

Parental Perceptions of TeachersParental Perceptions of Teachers Overall, parents of children in North Texas affected by Overall, parents of children in North Texas affected by

Autism have positive things to say about their child’s Autism have positive things to say about their child’s teacher.teacher.

Health of ParentsHealth of Parents Parents of children in North Texas affected by Autism Parents of children in North Texas affected by Autism

rate their health as excellent or good. rate their health as excellent or good.

Increased Stress of ParentsIncreased Stress of Parents Parents rate their health as excellent or good, but Parents rate their health as excellent or good, but

caring for their child with Autism increases their level of caring for their child with Autism increases their level of stress. stress.

IncomeIncome Families in North Texas affected by Autism listed the Families in North Texas affected by Autism listed the

following as their household income. following as their household income.

Out of Pocket ExpensesOut of Pocket Expenses 1.) $1,000 to $9,999 per year, 2.) $0 to $ 999 per year, 1.) $1,000 to $9,999 per year, 2.) $0 to $ 999 per year,

and 3.) $10,000 to $19,999 per year. and 3.) $10,000 to $19,999 per year.

Interventions UsedInterventions Used

Biomedical, behavior, and other therapy interventions Biomedical, behavior, and other therapy interventions are used simultaneously. are used simultaneously.


Other, please specify Other, please specify



Special Olympics

Play Therapy Videos, Games

Internet Use EdMark Reading Program

Comfy Land Computer Programs

Listening Programs

Social Skills Classes

Gymnastics

Auditory Integration

Karate, T-Ball, Modified Sports

Diets



Medication Brushing Circle of Friends

Life Skills Music Therapy PPCD

Inclusion SCERTS Craniosacral Therapy

Sign Language

Neruofeedback Brain Training Therapy

Problems of ChildrenProblems of Children Difficulty Eating Foods with Certain Textures, Anxiety, Difficulty Eating Foods with Certain Textures, Anxiety,

Behavioral Problems, Non-Compliance, Over Behavioral Problems, Non-Compliance, Over Stimulation, and Seasonal Allergies. Stimulation, and Seasonal Allergies.

Parents’ SpeakParents’ Speak What do you wish others knew about your life with a What do you wish others knew about your life with a

child in the Autism Spectrum? child in the Autism Spectrum?

““I wish others could really know the mix of burden and joy I wish others could really know the mix of burden and joy that is our life. He is truly a wonderful blessing every that is our life. He is truly a wonderful blessing every

single day. But he is also completely dependent on our single day. But he is also completely dependent on our ability and willingness to help him.”ability and willingness to help him.”

““I wish they understood how to offer support, and I wish they understood how to offer support, and could/would help with respite care from time to time. I could/would help with respite care from time to time. I

wish extended family would get more involved in trying wish extended family would get more involved in trying to learn more about the nature of autism and how it to learn more about the nature of autism and how it

affects our family.”affects our family.”



““If most could just understand the complexity of the mind If most could just understand the complexity of the mind - they are not just stupid or retarded. They are beautiful - they are not just stupid or retarded. They are beautiful

people.”people.”

““For the public to stop judging us and labeling our kids as For the public to stop judging us and labeling our kids as bad kids or poor parenting. It is a major challenge bad kids or poor parenting. It is a major challenge

raising kids on the spectrum and we do the best we can raising kids on the spectrum and we do the best we can and especially when there aren’t any other forms of and especially when there aren’t any other forms of support for us. Instead of judging us, try asking if we support for us. Instead of judging us, try asking if we

need help.”need help.”

Parents’ SpeakParents’ Speak What do you wish others knew about your life with a child in What do you wish others knew about your life with a child in

the Autism Spectrum? the Autism Spectrum?

““Stress is never ending. Just when you move through one Stress is never ending. Just when you move through one problem or crisis, another one pops up. We need people to help problem or crisis, another one pops up. We need people to help

with everyday care issues. One size fits all programs do not with everyday care issues. One size fits all programs do not work. We need help early on when they are young so that they work. We need help early on when they are young so that they

maybe won't need it later.”maybe won't need it later.”

““It is a 24/7 job regardless of where I may be. The financial and It is a 24/7 job regardless of where I may be. The financial and marital stress from having a child with ASD is more than any marital stress from having a child with ASD is more than any

other type of stress I've experienced. There is no such thing as a other type of stress I've experienced. There is no such thing as a "good night's sleep;" we may never be "empty nesters" and the "good night's sleep;" we may never be "empty nesters" and the worry about what will happen to her when we are no longer able worry about what will happen to her when we are no longer able

to care for her is constant.to care for her is constant. ””



““That it is very lonely and isolating; my son needs to play That it is very lonely and isolating; my son needs to play and be engaged with typically developing children so and be engaged with typically developing children so

he can model their social/emotional behavior instead of he can model their social/emotional behavior instead of always being stuck with kids who have disabilities too.”always being stuck with kids who have disabilities too.”

““People with ASDs have much to offer the world and need People with ASDs have much to offer the world and need respect for their ABILITIES.respect for their ABILITIES.””

““That my son is not strange, and if other people would get That my son is not strange, and if other people would get to know him without judging him first [they would see to know him without judging him first [they would see

that] he is a wonderful individual.”that] he is a wonderful individual.”

Parents’ SpeakParents’ Speak What do you wish others knew about your life with a child What do you wish others knew about your life with a child

in the Autism Spectrum? in the Autism Spectrum?

““He looks normal, and I love that you think he isn't really autistic. He looks normal, and I love that you think he isn't really autistic. It's a huge compliment to me that he is doing so well. But he It's a huge compliment to me that he is doing so well. But he

needs reminders and a little management to keep it together in needs reminders and a little management to keep it together in social situations and busy settings. Please do not assume I am a social situations and busy settings. Please do not assume I am a

witch or a bad mother or mean person when I speak to him witch or a bad mother or mean person when I speak to him firmly in a louder than normal voice. He has auditory processing firmly in a louder than normal voice. He has auditory processing

problems, and he will not hear me unless I do this using very problems, and he will not hear me unless I do this using very simple, direct words. Please do not tell me to relax and ignore simple, direct words. Please do not tell me to relax and ignore him. If I had relaxed and ignored him, he would still be beating him. If I had relaxed and ignored him, he would still be beating

his head on the ground and screaming 12 hours a day. He would his head on the ground and screaming 12 hours a day. He would not be talking. Please try to understand even though you aren't not be talking. Please try to understand even though you aren't

seeing it. You don't want to see the autism. It's not pretty.seeing it. You don't want to see the autism. It's not pretty.””

SummarySummary

This comment from a parent is an excellent summary: This comment from a parent is an excellent summary:

““Children with autism can learn to relate to others. More Children with autism can learn to relate to others. More resources offered through schools would improve the resources offered through schools would improve the lives of children with autism and probably also other lives of children with autism and probably also other

students. There are multiple stresses for families when students. There are multiple stresses for families when their child has Autism, but also lots of joy in seeing their child has Autism, but also lots of joy in seeing them improve and learn. Autistic kids are extremely them improve and learn. Autistic kids are extremely

hard workers who want to do their best.” hard workers who want to do their best.”

With our combined help, we can include children with ASD With our combined help, we can include children with ASD and help them take their place in society. It takes lots of and help them take their place in society. It takes lots of patience, resources, and education on the part of us all. patience, resources, and education on the part of us all.

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By: Demetria Ennis-Cole, Ph.D